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Wednesday, January 26, 2011

Early in our dating, my now-husband expressed a belief that people get sick because, for some reason and at times subconsciously, they want or need to get sick.

Maybe they want a day off work because they've been putting in long hours, so they somehow develop a cold and get that sick day they've been longing for. Maybe there's some other reason.

At the time, he was talking about himself, but as I was struggling to recover from what turned out to be a career-ending on-the-job injury (I retained a job for an additional 10 years, but my career died on May 19, 1995.) that started me on a path of chronic pain, I took it personally and got my feelings hurt badly. Of course, high levels of pain make almost everything feel personal and intended to be hurtful.

But that whole concept that people have mental control over their health and well-being is ... well, crazy talk, in my opinion.

Focusing on positive thinking and choosing happiness can certainly have an effect on one's life. After all, life just has to be more pleasant when one is happy and thinks positive. But it doesn't make one healthier, and I was delighted when my friend Shiri posted a link on my Facebook page to a NYT article on exactly that topic. (Note: You may have to register on the newspaper's website to read the article, but access is free.)

What can I say? It resonated deeply for me.

An excerpt that jumped out for me:

"[T]here’s no evidence to back up the idea that an upbeat attitude can prevent any illness or help someone recover from one more readily. On the contrary, a recently completed study of nearly 60,000 people in Finland and Sweden who were followed for almost 30 years found no significant association between personality traits and the likelihood of developing or surviving cancer. Cancer doesn’t care if we’re good or bad, virtuous or vicious, compassionate or inconsiderate. Neither does heart disease or AIDS or any other illness or injury."

A little farther down, the writer talks about the human desire to want to believe that in the end, only good things happen to good people. That belief forces people who can't overcome their health crises to question whether they did something to "deserve" their illness and/or injury. I've written about the issue here before, the inner critic who keeps telling me that I must have done something to deserve this chronic illness, that it must be some kind of karma.But it's not healthy emotionally to believe that one brought one's illness on oneself. OK, a smoker who develops lung cancer or an alcoholic who develops liver disease should take some responsibility for the way their choices affected their health. But y'know, half of those people who get interviewed for living to be over 100 credit their age to smoking and drinking. (The other half credit their longevity to refraining from those vices.) And even for those who smoke or drink heavily, it sure looks like genetics plays a huge role in determining who's going to have repercussions for their vices.

In a Facebook conversation about the NYT article, a friend whose husband has had serious health issues wrote on my wall: "Total pessimists have beaten terminal illnesses and vice versa. A positive attitude might get you through a difficult time, but why would it save one person and not another? Why do people who have completely given up hope survive? Hope is a good tool if it keeps you focused on doing all that you can, but ultimately it's the luck of the draw."

I know I'm rambling here. But I feel like it's unfair and cruel for society to continue to hold onto this wishful thinking that essentially tells people whose loved ones die or remain seriously ill that well, they must have done something to deserve it or they would have had a personal miracle. Is that really the message we want to be sending to people who are suffering enough already?

My friend has recommended that I read a book by Barbara Ehrenreich called Bright-Sided: How The Relentless Promotion of Positive Thinking Has Underminded America. I'll let you know what I think after I've had a chance to read it. :-)______ *Disclosure: I'm an Amazon Associate, so any purchase you make after entering Amazon through a link in this post or anywhere on my blog will earn me a tiny commission, which I will be extremely grateful for. Since Amazon protects your privacy and doesn't tell me who makes those purchases, I won't be able to thank you directly, but please know that it's greatly appreciated. Thank you!

Tuesday, January 25, 2011

No matter how much you love your child, every (good) parent has that inner critic who points out everything s/he does wrong or imperfectly. I was at the pharmacy today and saw a young mom with a happy, active baby. They had come from a well-baby checkup, told he needed to be on vitamins with iron because he drinks goat's milk, which has no iron. But the prescription the baby was given for a type of vitamin that didn't include iron, and she was clearly frustrated and I saw her walking off with her cell phone by her ear talking to the pediatrician's office because she needed a prescription for iron supplements now.

A little while later, I saw her in a nearby line. Her baby was in his stroller and she was talking to a cashier when an old gentleman apparently suggested she pick up her baby because he was fussing. I didn't hear what he said. But he apparently said several things because her responses got progressively louder as she told him first that the baby had gotten three vaccinations that day. Then, she told him that she has chronic back and neck issues that make it impossible for her to carry her baby throughout the store and that her doctors have told her to limit how much she carries her child. And, she reminded him, it was none of his business, "and you don't know everything, you don't know anything about me or my baby, so mind your own business!" I was so torn between wanting to say something to her and being aware that really, it was none of my business either. And she was upset, so I didn't want to make things worse somehow.

We ended up walking out at the same time, and I decided to do what I always wished someone would do for me when I'd been in similar circumstances with a fussy baby: I told her that I'd overheard the conversation and that the old guy was out of line and that it was clear she's doing her best and that the baby was lucky to have such a good mom. Boy, did she give me a huge smile of relief!

I think I would have done that for virtually any mom, but I know exactly what it's like to look fine on the outside and be in a lot of pain on the inside, and to have people judging how I parent based on what they can see. After all, I look fairly healthy -- why can't I take Ellie on all kinds of mother-daughter adventures? When she was an infant or toddler, why couldn't I just carry her, or wear her, all the time since that was what made her happiest? (Or at least whenever she was upset not to be getting carried?)

It's so easy to be judgmental, especially when one doesn't have all the facts. I wish more people would err on the side of believing people in general were doing the best they could.

Monday, January 24, 2011

I feel a vent coming on, but the one I'm writing now is not the one I've been wanting to write for over a week now.

I want to blog. I really do. And when I'm not online, I have ideas on what I want to write about. But really, do I have anything new to say?

I'm still on my little "holiday" (although I drew a blank when my FIL asked me if I still were over the weekend -- somehow, stopping needed pain meds just isn't fulfilling my mental soundtrack of Madonna's song Holiday. :-), but it just means I'm hurting more and have less energy, and being even less productive.

I've seen both my internist and my rheumatologist since that post, and both said that while there's nothing unsafe about my little break from pain meds and Adderall (which I take off-label for fatigue), they didn't think the levels and frequency I was taking them at were likely to be the cause of my headaches (which haven't improved, either). That was somewhat encouraging -- I'm a little paranoid about taking these meds that can be addictive when abused. But also a little depressing when my rheumatologist said flat out that he'd "be surprised" if I didn't end up needing to resume pain meds (due to my pain levels that they haven't figured out a different way to treat since I'm prone to gastric ulcers from every variety of NSAID out there).

The good news is my internist says that the Mayo Clinic website is being ultra conservative at saying it would take six months to be sure I'm not having rebound headaches. She says that with the drug type and low levels I was taking for pain that she believes that eight weeks would be more than sufficient to determine if the headaches are rebound ones.

That's about all the news I have. I'll try to get the post I've been struggling with written and posted soon. Thanks for reading, and please consider leaving me a comment to let me know how you're doing too, ok?

Saturday, January 15, 2011

I'm taking what my friend Joan calls a "drug holiday." Not that I can stop taking all my meds -- it would be a Bad Thing if I stopped taking things like allergy, asthma and thyroid meds. But I've gone cold turkey on my pain meds and the Adderall I was taking (off-label, but under doctor supervision) for fatigue. I was on such low doses of both anyway there was no need to taper down.

Why did I start this drug holiday?

I'm not entirely sure. I saw a new neurologist -- the neuromuscular neurology specializing one -- last week who said that one of the first things to do for frequent headaches is to avoid narcotics. Although I don't think my pain med usage was causing rebound headaches (which can also be caused by Tylenol and/or ibuprofin), but they've been really bad lately so I figured it was worth trying to see if I could decrease the number of bad headaches I'm getting.

Adderall can also cause headaches as a side effect, so taking a break there too seemed like a good idea.

According to the Mayo Clinic website, it can take up to six months to break the rebound headache cycle. We'll see. I also think I may have a lingering sinus infection contributing to the mix, and I expect my internist will want to try a round of antibiotics when I see her on Tuesday.

I'll also listen to what she has to say about my drug holiday and whether she thinks it's likely to help my headaches. I do know that she felt I was using pain meds appropriately and minimally, as does my rheumatologist.

We'll see. Drug holidays don't (necessarily) hurt, and don't have to last forever if it turns out that the meds were helpful without being harmful.

____________

For anyone reading this blog post and considering taking a drug holiday of their own: I strongly recommend you discuss it with your doctor first. Many medications need to be tapered and can be dangerous if stopped abruptly. (Many medications also should never be stopped, and stopping them can have very serious and even life-threatening repercussions.) I have done this before, and discussed it then with my doctor before doing it. This time around, I was on much lower dosages of pain meds, so I knew it wouldn't be a problem for me. But please do as I say here and not as I'm doing and talk to your doctor first.

Wednesday, January 12, 2011

Tim Moore, who has answers to almost any question you can imagine regarding disability at his site, The Social Security and Disability Resource Center, has kindly written a guest blog post for us on a topic that's of particular interest to me and I know is also applicable for at least some of my readers:

What if you go to a disability hearing with complicated or not fully diagnosed health issues?

This is actually not an uncommon scenario. Very many hearings take place in which A) the claimant's condition is not specifically and concretely tied to one condition or B) the medical evidence does not yield clear lines between the cause of illness and the resulting effects. Fortunately, however, the social security administration's approach to deciding social security disability and SSI claims does not focus on the identification of an impairment, but, rather, on the functional limitations that result from a condition, or set of conditions.

In all social security disability and SSI claims that are filed with the social security administration, the claimant's medical records will be gathered, read, and reviewed. The disability examiner (if the claim is pending at the disability application or reconsideration appeal level) or the the administrative law judge (if the claim is pending at the hearing level) will attempt to discern what the claimant's RFC is, based on the available medical record documentation.

RFC stands for residual functional capacity and it is simply a measurement of what a person is still able to do, despite their illness. Knowing what a person's residual functional capacity is, i.e. knowing what they are still residually capable of doing, can allow the decision-maker on a claim to determine if the individual is capable of returning to their past work, or if the individual is capable of performing some type of other work. If the medical record indicates that the claimant can do neither, then the case will be approved.

So, does it really matter what a person's specific illness is when they go to a disability hearing? Well, it is true that the clearer a case is, the easier it may be for an adjudicator to discern what the claimant's functional limitations may be. And, in certain instances, having a specific and clearly diagnosed impairment can lead to an approval based on meeting or equaling a listing in the impairment listing manual (This is a listing of impairments for which approvals can be made so long as the medical record substantiates specific criteria. Known as the blue book, it is published under title "Disability Evaluation under Social Security"). However, in most cases, the identification of an illness in the medical records will do nothing for a case if those same medical records do not support the existence of functional limitations that are severe enough to prevent a person from engaging in work activity that is substantial and gainful.

This is actually the single area in which disability representation may be the most helpful. An experienced and insightful representative should be capable of assembling a presentation of the case that highlights physical or mental limitations that preclude both the claimant's prior work activity, as well as preclude the ability of the claimant to switch to form of other work that, otherwise, might be logical based on the claimant's work skills and education.

How does a good representative accomplish this? Two ways. First, by knowing which information in the medical record to focus on (for example, evidence of the ability or inability to engage in normal daily activities that involve basic tasks such as standing, sitting, reaching, stooping, lifting, memory, learning, maintaining attention and concentration, etc). Secondly, by working to obtain qualified and objective statements from a claimant's treating physician or physicians.

The author of this article is Tim Moore, a former medicaid-disability caseworker and a former disability claims examiner for the social security administration's DDS, or disability determination services. Tim Moore is the publisher of The Social Security and Disability Resource Center.

If you're in the application or appeal process seeking Social Security Disability, I strongly recommend you browse Tim's site, which is full of helpful, informative articles on the entire process, from initial application through final appeal.

Friday, January 7, 2011

Let's see -- it's January, and I'm having GI issues again. (And my gastroenterologist's assistant is once again not returning my calls asking to schedule an appointment. Sigh. I've been seeing that specialist since 2000 and I adore him, but I've been frustrated ever since his small practice merged into a large one.)For four consecutive years, I developed weird new symptoms in early springtime (February to mid-March) and have had an intense flare up of my "usual" symptoms. So I'm bracing myself to see what happens this year and reminding myself not to get freaked out the way I usually do when something new goes wrong with my body. (If the Powers That Be are reading, I'd be thrilled to have my "weird new symptoms" this year be the disappearance of all my old stuff. Any chance you could make that happen?)

Autumn has historically been a good season for me, but with Ellie now attending a Jewish day school and therefore having way too many short weeks of school at the start of the year because of all the Jewish holidays, I'm guessing Autumn will no longer be my "good" time of year.

By the time those holidays (Rosh Hashana, Yom Kippur, Sukkot) are over, we're approaching Thanksgiving and the December holiday season, which combines with Ellie's birthday, and I'm pretty sure the November/December/January craziness is the cause of my early spring flares.

I'm not really sure what I'm getting at here. But I find the realization that, for instance, it's likely I'm heading into a flare-up that will knock me on my butt for the fifth year in a row to be distressing, if only because if it's predictable, I should be able to do something to avoid it. Right? And yet it's not like we're attending tons of holiday parties in December. (We got invited to two Chanukah parties this year, I attended the first and reluctantly sent Scott & Ellie to the second without me. And I think that may be the grand sum of holiday party invitations we've received since I got sick ...)

Ellie's birthday party is this weekend, and we make it as stress-free as possible by having it at another location and timing it so that all we provide are snacks, cake and drinks. No having to clean the house before and after the party. There's always an activity as part of the party; this year's is a ballet party, last year was gymnastics, previous years we've done the bouncy places and arts & crafts parties. All of the parties have always had activities led by someone else. This year, my goal is not to repeat last year's experience of passing out in the bathroom at the end of the party. Possibly the grossest thing ever was waking up with my cheek against a grungy bathroom floor, and then not having the strength to sit up for awhile. Ewww, it makes me shudder just thinking about it again!

I guess it's one thing to recognize a pattern, but something else to know what to do about it.

And on the other hand, it seems like on shows like Mystery Diagnosis, it's the "startling new symptom" that develops that finally gets the patient diagnosed and, ideally, cured. So, if I have to develop another weird new symptom this spring, let's all hope it's the one that helps the doctors figure out what's wrong with me and how to treat it so it's manageable if not cured. (Powers That Be? You still reading? If my symptoms can't all just disappear miraculously on their own, how about giving me the symptom that helps my doctors diagnose me? And, if it's not asking too much, can the diagnosis be something that's fairly easily cured? Pretty please?)

Monday, January 3, 2011

School resumed today, which is a glorious thing. I'm hoping that by the time the weekend rolls around, with Ellie's birthday party scheduled, I might have a smidgen of energy again.

I write often about the guilt I can't seem to get away from, and I know it's pretty much a universal theme for chronically ill moms (really, all moms!), and probably just about anyone. Rachael over at Glass of Win looking for submissions for the next edition of Patients For A Moment, and the theme is guilt. With luck, I'll manage to get a post written in time, otherwise I'll have another thing to feel guilty about ... If you blog, please consider exploring the topic and submitting a post to Rachael.

Meanwhile, Leslie of Getting Closer To Myself is looking for more bloggers to volunteer to host an edition or two of PFAM in 2011. Take a look at her appeal for volunteers and consider offering to host. There's a lot of blog carnivals out there, but I truly believe that the people involved in hosting, submitting and wrangling this blog carnival are some of the nicest and most generous. I'll be hosting March 9, which I chose for its proximity to my birthday. :-) Leslie's goal for the year was to have a different host each edition -- there are eight editions spoken for so far, so only 18 more slots to choose from! Better get in touch with Leslie soon to get your dibs in!